# Community perspectives on epigenetic dementia risk testing: Willingness, implementation preferences, and reasons for not testing in midlife and older adults

**Authors:** Deirdre M. O'Shea, Devi Dhanekula, Swati Kumar, Lily Wang, Lisa Wiese, Tatjana Rundek, James E. Galvin

PMC · DOI: 10.1002/alz.71094 · Alzheimer's & Dementia · 2026-02-05

## TL;DR

A survey of older adults found that most are willing to take an epigenetic test for dementia risk, with factors like health literacy and AD concerns increasing willingness, while privacy and accuracy concerns act as barriers.

## Contribution

This study provides novel insights into community perspectives on implementing epigenetic dementia risk testing, highlighting preferences and barriers for adoption.

## Key findings

- 82.1% of participants expressed willingness to undergo a hypothetical epigenetic dementia risk test.
- Health literacy and Alzheimer's disease concern were significant predictors of testing willingness.
- Preferred testing modality combined biomarker and cognitive assessments rather than biomarker-only.

## Abstract

Epigenetic assays may support non‐invasive dementia risk stratification; community views on willingness and implementation remain under‐characterized.

In a survey of 425 adults ≥50 years old, we assessed the willingness for a hypothetical epigenetic test, implementation preferences, reactions to a high‐risk result, behavior‐change intentions, and reasons for not testing using multivariable models.

Overall, 82.1% showed a willingness. Health literacy (odds ratio [OR] = 2.61) and Alzheimer's disease (AD) concern (OR = 2.06) increased that willingness; doctor dependence decreased it (OR = 0.62). The top drivers were perceived to be accuracy and speed. The preferred modality was a combination of biomarker and cognitive over biomarker‐only. Intended changes prioritized alcohol reduction, then diet, exercise, cognitive activity. Risk worry and insurance concerns exceeded stigma; higher literacy related to lower stigma, and epigenetics familiarity and AD worry related to higher insurance concern. The reasons for not testing were data privacy/accuracy concerns, logistics/costs, and needles.

Findings support emphasizing test accuracy, turnaround, and governance/legal information when implementing DNAm testing for dementia risk.

Among older adults, 82% were willing to undergo epigenetic dementia testing.Higher health literacy and AD worry increased testing willingness.Doctor dependence was linked to a lower willingness to test.A combination of biomarker and cognitive testing was the preferred approach.Key barriers were data privacy, accuracy doubts, needles, and emotional avoidance.

Among older adults, 82% were willing to undergo epigenetic dementia testing.

Higher health literacy and AD worry increased testing willingness.

Doctor dependence was linked to a lower willingness to test.

A combination of biomarker and cognitive testing was the preferred approach.

Key barriers were data privacy, accuracy doubts, needles, and emotional avoidance.

## Linked entities

- **Diseases:** Alzheimer's disease (MONDO:0004975), dementia (MONDO:0001627)

## Full-text entities

- **Genes:** APOE (apolipoprotein E) [NCBI Gene 348] {aka AD2, APO-E, ApoE4, LDLCQ5, LPG}, MAPT (microtubule associated protein tau) [NCBI Gene 4137] {aka DDPAC, FTD1, FTDP-17, MAPTL, MSTD, MTBT1}
- **Diseases:** Dementia (MESH:D003704), AD (MESH:D000544), RESEARCH (MESH:D014947), Cognitive Impairment (MESH:D003072), anxiety (MESH:D001007), HBM (MESH:D004195), inflammation (MESH:D007249), HBI (MESH:D000067329)
- **Chemicals:** alcohol (MESH:D000438)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## References

59 references — full list in the complete paper: https://tomesphere.com/paper/PMC12875745/full.md

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Source: https://tomesphere.com/paper/PMC12875745